Living Obliquely

Approximately 1400 people are diagnosed with Transverse Myelitis (TM) annually.Similar to Multiple Sclerosis, it attacks your myelin, leading to painful and debilitating side effects.About 33,000 Americans are currently disabled as a result of this rare neurological disorder.Not one person with TM will ever know their prognosis.I happen to be one of them.

I am a neurological soup. Since my TM diagnosis, I have developed encephalitis, MS, RSD/CRPS, Osteoporosis (I am 34, no 35, eek), and Chronic Anemia. Yeah...life sucks, but I still rock.

1.24.2010

Let's celebrate Grandma Estelle's 83rd birthday (she'll kill me if she knows I announced her real(ish???) age), seniors everywhere, and the chronically ill, or even momentarily sick people by picking up your phone for a few minutes or more.

Leave a comment if you'd like to join me, or if you're a loner activist, tell us that you'll be taking action solo.

The more who do, the more who will be inspired to do too. (Sounds like it should be a fortune cookie proverb.... - in bed.)

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Here are the details:

We Are At A Critical Point for Health Care Reform!

There is no time to waste in the next couple of weeks. We have to keep fighting and let our Members of Congress know we expect nothing less from them.

Many of us are frustrated after the MA election, but we have to remember 98% of folks there have insurance due to their state reforms. The rest of us are still struggling as much today as we were before the election! Two people in PA are still dying every day as they wait around for access to quality, affordable health care.

Help us make a real difference during the National Day of Action on Monday, January 25th. We will be generating hundreds of calls into Congressional offices. Please come out to help, we will be taking action all day, from 9 AM - 9 PM at the PUP office, 112 N. Broad, 11th Floor.

Stop in for an hour or two after work, or during lunch, or any time during the day!

This type of action is Extremely effective, but it only works as a team effort with everyone stoping by at some point throughout the day.

Can't make it to Philly for the Phonebank?

You can call from home! Ask Athena for more information: aford@phialup.org or 267-257-6968

Or You can jump on a conference call and we'll set it up for you to call from home!

1.12.2010

It's been several months since I last posted, a personal post, a far departure from my past glaring observations and ruminations of hope, humor, and inspiration. Well I'm here today, or rather this evening or morning, sleepless or wake-less, a year and a half into this neurological black hole.

1st step: Transverse Myelitis

piss your skin tight pants under the sun and in public

wake up without legs

get diagnosis

begin life in and in and out and in of hospital

rid life of negativity - people, thoughts, things not worthy of the healing cause

get attorney to fight Aetna for right to treatment

Aetna takes monthly payments and my most important 3 months of recovery

2nd step: Encephalitis

lose cognition

lose hearing in 1 ear

don't take thinker pose, it hurts the jaw bones

lose vision

Top Doc says, "you're crazy, you can see."

use walking cane as seeing eyestick to find way home

lose identity

lose self-confidence, or just lose, lose at games that you were the queen of winning, lose shallow lovers or hallowed loves - in sickness not health, there is little distinction

I'm one of the few or many with the lucky triad of neuro sentences, and I've been fed hope and lies and truths, and I've chewed it like a cow and its cud and spat it out smiling, and with each transfusion of "things will get better" jargon, I get more and more meds....and more diagnoses...and more treatment plans...and weaker in body...and weaker in something people cal spirit...and weaker in mind, brain cells are dumb cells, but now I can watch a movie on TV - beginning to end; popping 2 oxycodone midway - this is progress. This is progress?

This is not pity. This is my brain on neuro disorders and neuro drugs. Where is Melanie? She's not here this year. She's on a neuroflight, no vaccinations necessary or allowed - away from disappointment, anger a lot of anger, away from love that never was anything more than more negativity more spinal column aggravation. This life is aggravating. People are aggravating. Health people, stay away from me this New Year. I most likely hate you. Don't interrupt my journey with your champagne happiness. Perhaps we can meet again in 2011. But no, that's hope, and hope is disappointment. Swallow it all like midnight's toast, "to nothing, to nothing, hurrah, hurrah."

Friends say, you deserve to be sad, you deserve to be angry, and being sad and angry makes me more sad and angry. I used to think, at least this neuro shit won't kill me. But we now know that's not true. I'm dressed with a permanent permacath, that shakes its udders at infection, like a blond with a boob job worth flaunting. And then there's the portacath too, hovering in the shadow of its neighboring death trap.

I follow instructions, mind the rules, not showered in 3 months, keeping my central line clean, keeping my life line from death line, sleeping on ER benches and beds, digging through the bureaucracy and hypocrisy of insurance and health care. There is not enough Zoloft to overpower the neuro triangle.

I am a hospital bracelet - white, red, or yellow; such happy colors.

And here I am again, solo, baring my soul, a sap for a soul, a misplaced soul, solo, always solo along sidewalks of healthy happiness, such lucky happiness, such insensitive happiness, such insulting happiness.

In Pictures

Please Note: Some photos may contain partial nudity or depictions of medical procedures. Though I am in many of these photos, my reason for sharing these personal photos is to promote awareness, understanding, and advocacy for people with TM and other rare diseases.

To play the slide show, click the big play button in the center of the screen, then the small one in the bottom left corner. Click here for more advanced viewing instructions, and select "Help."

Want to know more?

The following are (incomplete) lists of resources, news, and groups that relate mostly to Transverse Myelitis, but also other neurological, autoimmune, and rare diseases, as well as spinal chord injuries, and people with disabilities.